Memoirs of a little bird

20 Months TSW

Big things in the works guys, sorry I have not been very active making videos and writing blogs but there will be PLENTY of them soon!!

I am working on a website (hoping to post it publicly October 1st!) about my documentary endeavor to raise awareness about Red Skin Syndrome and the prevention that needs to be implemented to stop it from occurring.

Lots of things happened this month.

One, I moved. Whew, holy cow it is SO HOT in Florida. High heat and humidity are KILLER on someone with Red Skin Syndrome, let alone trying to lug boxes and furniture around. It definitely aggravated my skin. My mom helped so very much during this time. My father also painted one of the walls in my new place since my energy was pretty low (got a cold now from the stress of moving).

But, what’s even MORE exciting than moving is that I was invited to attend the CSD/AAD conference in Washington D.C. with ITSAN as a patient advocate. CSD stands for “Coalition of Skin Diseases” and AAD is the “American Academy of Dermatology”. We stayed in this gorgeous hotel that was right near the White House, ate delicious food, sat through countless meetings on legislation, regulations, and non-profit tips, as well as linked up with our state representatives to discuss reform.

Now, the reform wasn’t necessarily about RSS in the field, but there were a few things that would help us in the future, perhaps with research. I will be doing 3 videos on this trip (I am behind because of the move, but I WILL be getting to them shortly). So much footage to sift through and cut together.

Let me just say one thing though. To anyone who doubts what ITSAN (The International Topical Steroid Addiction Network) is doing for this cause, you will need to watch my videos. They are FIGHTING for us, tooth and nail, spending countless hours researching, advocating,and building relationships all while earning pennies whilst doing it. So many of us would be LOST without them.

Although I am not an affiliate and do not speak on their behalf, I will say that they deserve the hugest THANK YOU ever. Please consider donating to the cause to help them keep fighting for us. Even just $5 would make such a difference. Seriously, even $1 would mean the world. This would allow them to attend more functions and create more relationships, making our cause even more heard.

PICTURES

PS. I stopped the St. John’s Wort experiment 1 week in. I started having a bad reaction to something (my stomach photos) and it seemed to go away and now it’s back. I wasn’t sure if the St. John’s Wort was messing with me, but I don’t think it was. Sorry guys. No results since I had to stop.